Today, I slept in, because I’m sick and needed the rest, but regretted it when I ended up waking up sobbing from nightmares about the godsister of the person whose body this used to be.
It’s so weird to have memories of being a person while so distinctly not being that person. I, Astrid, will get hit with a trigger, and Alena’s memories flood in like a horror movie, but they’re not *mine*, so resolving them feels not just impossible, but useless.
Sure, I could reach out to her godsister and talk about the complicated unresolved situation between them, but the echoes of Alena’s discomfort at the years of being treated like a backwoods backup option and throwaway *won’t go away* if I, *a different person*, talk to *her* godsister and explain, like a freakish medium wearing the ghost’s face, that I’m trying to resolve her unresolved issues so the ghost will move the f on. (I know this, because I wasted the first few years after the strokes trying to resolve the issues of Alena’s life like she was a ghost I was trying to wrap up the earthly cares of.) Because there *is* no actual ghost, just the memories of another life, one with choices I don’t understand and motives I can’t speak to, like a movie.
Talking to the actors who played them years after the movie wrapped *won’t make the movie end different*. Alena isn’t *here* to even *get* closure or be freed, she just left me with the movie and no directions and a bunch of feelings tied to the *muscle memories* of this body but not to its *brain*.
“Hey, btw, I’m not her and I don’t wanna fix shit and be friends with you, because I actually think you’re a pretty cruel and inconsiderate person who refuses to take accountability for the way you use people, but I’m going to just drag you to see if it makes me feel better! Because I only ever feel worse and something has to change!
“At least one of Alena’s own parents straight up spent years thinking she was intentionally stealing their money because of how much of it she was spending it just feeding you actual nutrients and taking you to the doctor for pneumonia like four fucking times and keeping you alive in between your rounds of dissociative party bullshit and boyfriends who literally laughed to Alena behind your back about how they were using and abusing you and going to literally kill your mom one day to make you truly alone and belong to them and there was nothing Alena could do about it.
“When Alena was dying in the hospital, you wouldn’t even pick up the phone, because you were mad over things she couldn’t control saying and didn’t mean and wasn’t intending to say because her brain was being *riddled with holes* while she was screaming and begging for you to please come say goodbye.
“I can’t ever erase Alena’s memories of this, and I can’t ever make her feel better about it, because she’s legit gone, but since I have to live with the nightmares and flashbacks to her life and the thousands of ways you made her feel worthless and unlovable and never enough *every single goddamn day*, I just thought I’d tell you what an absolute garbage friend you were for 27 years and that Alena died still desperate for your love and approval and this body still wakes up crying from dreams about it even though this brain has never met you and never wants to, because you suck. Thanks so much for listening, this has made both our lives at least a little worse.”
Like…no fucking thank you.
That woman was hard enough to talk to seriously about anything important, let alone get her to be accountable, when I was somebody who actively loved her.
Now I’m just a kid who inexplicably remembers what it felt like to love her, and not be loved back in any meaningful or useful way, and how much it broke the person who used to have this body, and what a mess that left me with when I landed in it.
And there are HUNDREDS OF THESE—FEELINGS AND GHOSTS AND MUSCLE MEMORIES AND BAGGAGE THAT JUST ISN’T MINE. That I didn’t pick up on purpose, and don’t have the strength or skills Alena had to carry all of it—I just landed here, holding it, like a kid left with her aunts bags in an airport bathroom. And the “aunt” actually ran off with a flight attendant, and then the plane fell out of the sky, and she’s never coming back.
My brain is just. Full. Like a cup with too much tea in. There’s no room for Astrid, because it’s all taken up with Alena’s baggage *that I don’t even believe in* but *can’t seem to offload*, no matter how much therapy my family kindly pays for.
There’s a half-finished weaving on my loom, threads dangling, no more of those threads to pick up and use and finish it, but I’m just supposed to somehow tuck in those ends like they’re not an unfinished picture and start weaving my own thing here anyway? I’m supposed to somehow just *start*, without getting to cut the old mess off the loom and start fresh, and somehow turn the ragged, half-finished mess of somebody else’s life into a whole one for myself? While having no skills that aren’t broken shards of hers?
As…let’s say, a writer, yknow, looking at…the narrative of our attempts at resistance to fascism? Yeah, as a WRITER, looking at the NARRATIVE. I truly think folks have got to get more unhinged with protesting.
(Not violently—I’m not promoting violence, imaginary legal team!)
Just absolutely UNHINGED. Feral. Utterly off our nut.
Yknow, if this were a story, I mean. All that follows this? It is all a story. A hypothetical, satirical piece of dystopian metafiction. Really! I’m an author. No, honestly, I am, look it up. Totally an author, totally just speaking in literary evaluation of the plot of American antifascist efforts as narrative content. Absolutely, totally.
But, yknow, *as a story,* it’s missing something.
And that something?
Is A CEASELESS TORRENT OF BEAUTIFUL, CHAOTIC MADNESS.
We should start showing up to protests with bagpipes and drums and kazoos and *refusing to stop making them make noise* until we get human rights back.
“You! Officer! Where is all this drumming coming from?”
“Um. We’re working on it, but. It seems to be coming from EVERYWHERE, sir? Some of them are just drumming from home with the windows open. Others are blasting the drums over car speakers. We’re getting reports that workers are stopping mid-task to start banging things against whatever’s nearby to join in.”
“Nonsense, officer! People wouldn’t leave their jobs to do something so nonsensical! Round up these troublemakers! And for god’s sake, stop whoever’s strangling that goose!”
“Well, we did actually secure the initial bagpiper, sir, but several more immediately started up. The echoing is making them very hard to locate, and some seem to just be dummy ones—just speakers blaring bagpipes from rooftops and people’s pockets.”
Can’t play the bagpipes? Got no rhythm?
That’s not a bug, that’s a FEATURE! 😀
“Officer! What’s going on? Our server crashed, and the phone lines are all tied up with noise complaints.”
“We keep detaining drummers, but now the ones still out there are all playing different beats. It’s—well, frankly, it’s pure katzenjammer, sir.”
Like…wear face paint.
Wear masks. (Please, as a disabled person who can’t join street action largely because people don’t mask en masse, WEAR MASKS.)
Wear glitter.
Wear COSPLAY. Seriously, the more ridiculous and recognizable the better.
Dance and drum in the street.
Bring the kids. Bring the grandparents. Bring the wheelchairs.
Stand outside and SCREAM.
“WHAT is that unholy racket, officer??”
“Well, sir, there seem to be a bunch of people dressed as superheroes, robots, and cartoon characters swarming the streets. They were originally just marching and doing TikTok dances to the drums, but when we got them surrounded, they all just kinda…stopped, and stood still. And then—then, well—“
“Spit it out, officer!”
“They just started screaming, sir. Shrieking, really. This unholy, unnerving shrieking. All of them, all at once. If one pauses to breathe, the others just continue.”
“And? What are you doing about it?”
“Well, sir, we were about to deploy tear gas and firehoses, but they have an outer perimeter of children, pregnant women, the elderly, and people in wheelchairs.”
“So what?”
“Well, sir…it’s just, the optics. There are quite a lot of news vans and people filming on cell phones. Several well known drag queens are dressed as famous princess and superhero characters, and appear to be acting as independent broadcasters, describing the scene in character as if they’re really characters under attack by evil forces, sir. Initial responses from the public are…not quite in our favor.“
And when you stand up to be chaotic, don’t think like individuals.
Think like family. Everyone resisting is your sibling, whether you like each other and get along or not.
Think like community. You pull up the person beside you if they fall. You feed them if they’re hungry and you have food; if you don’t, you find food together.
Bring all the resources we have access to.
Spend our own time, our own money, our own resources.
We need to organize and bring and share everything we can, and make a real push like it MATTERS.
If not now, when?
Once they’ve thinned our numbers even more?
No, it’s time to stand outside and scream.
If you can’t go outside and scream, scream from inside. Drum from inside. Play bagpipes from inside. Hang speakers out the window and blast the sound of chaotic pixie giggling at full volume.
“Hmph. Well, they’ll have to stop shrieking to eat and sleep eventually. Surround them, officer; we’ll wait them out.”
“Um, well, sir…”
“What NOW?”
“We would, sir, but they seem to be sleeping in shifts, and, well…they apparently brought provisions. Folks from the local Renaissance Faire and SCA are directing the setup of what looks like a long-term encampment. Several port-o-potties were dropped off, seemingly donated. Large tents have been erected, places for people to rest, and they’ve got doctors and pharmacists who seem to have brought medical supplies to distribute as needed. Several food trucks with their logos and licenses covered have parked in a makeshift rear guard to their forces, and are distributing food and water, seemingly for free.”
“FREE? There’s no such thing as a free lunch, officer! Don’t they know how the world WORKS?”
“Well, sir, the one food truck worker we managed to detain said that a bunch of grocery store and restaurant workers donated expiring food that was still good but required to be thrown away. Apparently there’s quite a lot of it? Anyway, that’s how there’s so many more of them than expected—they’re offering free food, and somebody seems to have informed the students.”
“Well…all of them, sir? College students have been flooding in ceaselessly—we’ve spotted flyers advertising free food posted all around local campuses. But more than that, sir. Apparently several teachers, parents, and school cafeteria workers have joined forces, and are listing the school lunch debts of anyone who joins them as paid, and giving them all free food for the duration of the protest.”
Staying quiet and staying home will not save a single one of us, it will only doom us to live whatever’s left of our lives cowering in fear and living as something other, lesser, than ourselves.
Now is the time to be our truest, weirdest selves, loudly, together.
We need to get CREATIVELY WEIRD.
If you can’t contribute traditionally, if you can’t leave home to join in, contribute from home and contribute BIZARRELY.
“This is absurd, officer. We are the LAW! What about the K-9 units?”
“Uh, well, we’re working on it, sir, but the dogs are refusing to approach the perimeter, and there’s a really weird smell. One of the guys is a hunter, and he recognized the smell—he said they seem to have surrounded the perimeter with…uhh…predator pee, sir.”
“WHAT?”
“Apparently, the…uh, the urine of stronger predators discourages dogs from approaching? We got a few of the more veteran dogs to ignore it, but apparently the protesters include a bunch of hiking-and-dog lesbians and gay guys from the pup community, who thought it would be funny if they brought a bunch of dog whistles.”
“Dog whistles, officer?”
“Yes, sir. The really shrill ones that dog trainers use? They keep blowing them, and between that and the urine perimeter and the noise of the drums and bagpipes, the dogs are going haywire, sir. On top of that, the sides of the food trucks have been armored with old phonebooks and strips of old tires, and the cooks keep throwing meat scraps to reward the ones who ignore our orders.”
If you see an opportunity to toss some glitter in the gears of the machine, do.
If you see chaos starting, add to it (without adding violence.)
The machine of fascism relies on human cogs being able and willing to show up and do the stuff they’re told. If you mess with the functionality and authority of those cogs, make their day to day lives harder, they machine turns a LOT less smoothly.
When I say to add chaos without violence, what I mean is, gum things up.
Inconvenience the stormtroopers.
Stand between the machine and somebody being crushed by it.
Do you work in a lunchroom? Did that kid take a lunch without paying for it? No, they didn’t. If somebody asks questions, it would be a shame to play as dumb as they pay you like you are.
Do you work in a chain grocery store? Did that person pocket food and leave the store quietly? No, they didn’t. If somebody asks questions, it would be a shame to play as dumb as they pay you like you are.
See ICE or DOGE show up? It would be hilarious and very silly and also has been proven effective to stop and shriek and point at them and start shouting variations on, “oh my god somebody call the police, there’s masked terrorists with weapons over there!” It would be extra silly to tie up the phone lines calling to report those masked terrorists to the authorities.
Work in a corporate or government building? It sure would be a shame if an open can of tuna found its way into the CEO/higher up’s air vents. If somebody asks questions, it would be a shame to play as dumb as they pay you like you are.
Are you a SW whose clients include hypocritical politicos or neoNazis? Sure would be a shame if you accidentally recorded them and sent proof of their hypocrisy to their wives/mothers/adult offspring/entire workplace.
Got an old junker? It’d be crazy to rip the plates off, file off the VIN, go park it in between protesters and aggressors, and leave it with the speakers blaring The Hanging Tree or Ke$ha or Bob Dylan or The Wiggles until the batteries give out—so definitely don’t do anything like that.
You know what really messes with cameras, so you definitely shouldn’t utilize to shield yourself? Highly reflective surfaces, including mirrors and sparkly clothes and fans and parasols and glittery makeup! Also? Laser pointers. So definitely *don’t* use those near cameras or drones—unless you *want* to mess with them, which would be very silly and naughty and none of *my* business! 🙃
“This is ridiculous, officer! Food trucks? Bagpipes? Break through their lines and arrest these hooligans!”
“Well, sir, we’re working on it, but they seem to have made a perimeter barricade of boxes of expired soda, and a bunch of junkyard workers and construction folks just showed up to reinforce it with truckloads of old tires and cement. Children in cute costumes are climbing the tire stacks like jungle gyms and…well, they’re playing kazoos and waving banners with hearts on them and blowing bubbles at the riot police, sir.“
“BUBBLES, officer? Our forces are being undermined with BUBBLES?”
“Yes, sir. They seem to have several bubble machines, too, and are using dry ice to create fog as well, so our drones are having trouble getting clear images. Several people seem to have glued pieces of mirror to umbrellas, and it’s doing crazy things to the light and making it nearly impossible to get clear visuals. They also seem to have t-shirt cannons, and they’re using them to shoot down the drones with balled up Pride flags, as well as the flags of Palestine and Ukraine. From what little we CAN see, most of them are masked, or wearing respirators, and the ones who aren’t seem to have their painted faces, or are in full furry mascot suits. Footage and facial recognition are useless.”
It is so important that we begin to push back in ways that are NOT “through the proper channels.”
The reason the folks in charge want us to use those is because they control the proper channels, and know that they don’t work unless they LET them work.
Again, not suggesting anything violent, just beautifully weird and authentic and very, VERY annoying.
We don’t have to *destroy* fascism like it’s an anime villain or video game boss.
All we really have to do is *uproot* fascism’s hold, and all we need to do *that* is to be WEIRD and LOUD and UNGOVERNABLE and IN THE WAY.
We just have to be punk. Punk is ANYTHING that flips a bird to the fascist status quo in protest (without actively hurting anybody. Again, imaginary legal team, I would never suggest that.)
We must be like hobbits facing the spreading darkness of Mordor.
We must be like Picts, the thorns in the side of Rome.
We must be like the protagonists of the stories of freedom and revolution that we were raised on, who touch our hearts and unite us all.
Do you think Sailor Moon and Luke Skywalker and Katniss Everdeen and Aragorn, son of Arathorn and Alanna the Lioness and The Doctor would be proud of you?
It’s time to make SURE they would be.
“Furry…mascot suits, officer? What are you even saying?”
“Well, sir, uhh…people in fursuits are setting up sound and light equipment in the center of the protesters, and beautiful young women in cosplay are carrying baskets and going around handing out earplugs and eye shields to protesters who request them. I—well, I think the drums and bagpipes were just a prelude, sir. They’ve tapped into the electrical grid, and they have ENORMOUS speakers painted with trans pride flags.”
“HA! Showing their ridiculous colors now. Do they really think we’ll be afraid of furry DJ freaks?”
“Uh, well. Um…”
“SPIT IT OUT, officer!”
“Well, sir…they’ve, uh, they’ve sent all the traffic lights in the city haywire somehow, sir. Cell phones aren’t working correctly, and local government websites are crashing. Apparently they’ve hacked into several government databases and replacing lists of targetable minorities and dissenters with the code for DOOM.”
“What are you even TELLING me, officer?”
“I—well—some of the men are saying that the IT and finance furries have joined the resistance, sir.”
“The IT and finance—furry, what—I—that is the TERRORIST REBELLION, officer! Not the RESISTANCE.”
“Uh, right, sir. The terrorist rebellion of…costumed children blowing bubbles and people dressed as fluffy animals and superheroes playing music and dancing.”
“They are DEFYING THE LAW, officer! They are a public nuisance, and a threat to our ability to maintain order!”
That’s the real threat to fascism, you see.
Not violence or perfect strategy—chaos and humor.
The atmosphere of nervous silence that fascism relies on is broken by laughter, by song, by dance, by silliness of any type.
The idea fascism relies on, the thing that makes up its backbone, is the idea that its leaders know and control the Way Things Are Done.
If we start doing unhinged madness instead of things they expect, we replace the order of fear with the chaos of absurdity.
There is risk in even silly resistance.
There will always be risk.
I am talking about this largely because I am too immunocompromised and disabled to join in street action, so the only way I know to contribute is to speak out from home. Just doing *that* is a risk.
All we can do about that is make it just as risky for them to try to silence us.
And the thing is?
They’re human beings, they’re our sons and brothers and coworkers.
And they’re as vulnerable as we are.
“I can’t disagree with that, sir. They’ve bribed away half my squad to join them already.”
“WHAT? With WHAT?”
“Well, sir, they have beautiful women and femboys in cosplay dancing and blowing kisses and holding up signs offering free hugs and free food if they hand over their sidearms and join them. And sir, the food? It uh. It smells REALLY good.”
“WHAT did you say, officer?”
“It’s mouthwatering, sir. The smell. It’s like all the ethnic minorities we’ve relegated to underpaid foodservice jobs have decided to abscond with supplies from work and come feed the resista—uh, rebellion.”
“Just get in there and PUT THOSE DEVIANT FREAKS DOWN, officer!”
“Well, I would, sir, but…uh, well…my mom and my wife apparently joined them after I went to work this morning, and, uh, well…my kid is dressed as Captain America and, uh…blowing bubbles at me from the barricade. My wife’s last text to me said ‘Magneto was right’, whatever that means, and that I have two hours left to join her and the resistance, or she’s going to leave me for ‘someone brave enough to do the right thing instead of just doing their job.’ Sorry, sir; I’m out.”
a photo of a refrigerator magnet haiku, reading: “mushroom children laugh / tyranny only unites / every bloom beneath”
I go by Astrid now. On purpose! Please don’t call me Alena. Alena was pre-strokes; Astrid is post-strokes. Astrid has access to most of Alena’s memories, including skill and feeling memories, but doesn’t practically have those skills and feelings, is not [even able to be] that person. I won’t be mad at you if you slip, but hearing it is painful and something I want to move on from, so if you care for me, and my comfort and identity matters to you, please work to shift to calling me Astrid. 💖 (Yes, all my publications and my website are still under the Alena name and will have to stay that way for the foreseeable future for practical purposes.)
I live in Bangor, Maine for the time being, with my partners, Bruce and Joe. (Bruce is my husband of 5 years, some version of whom most of you probably know by now; Joe is my boyfriend of a year and a half, who joined the household and moved in last year.) We moved there to be close to my medically-adept mom out of necessity due to my health.
For whatever reason, my body and brain don’t seem to work very well back on the East Coast, especially my lungs and connective tissue, and it’s like having a dog on my chest and being crushed in a laundry mangle all the time, and so far, the only relief has been coming back to Colorado temporarily. Since I have no income and am too disabled to work (even creatively/part time) reliably, trying to figure out my life and how to live somewhere that doesn’t feel like it’s unaliving me the whole time I’m there is overwhelming and scary, and pretty much everything depends almost solely on the kindness and support of others right now, especially my family. It makes me feel really burdensome and beholden to need help with basically everything and have so little hope of being able to take back over doing these things myself, and it’s hard not to just be fraught and frazzled all the time.
Medical care in Maine has been impossibly terrible, and I haven’t been able to get the psych meds I was finally stable on after 15 years of trial and error (that irreparably damaged my personal life and my body) because the doctors here refuse to accept the word of my CO and GA doctors and want me to start from the very beginning of that nightmare all over again. It’s really disheartening, and if I weren’t on an escape in CO right now, I honestly don’t know what hope I would have, because going through that medication gamut almost unalived me multiple times the first runthrough, and that was back when I was healthier and more stable; after a fortune in finance and suffering and time spent and friendships lost and relationships damaged to find the med balance that let me live SOMEWHAT LIKE A PERSON, I’m utterly unwilling to start that process over because the Maine healthcare system doesn’t think the word of multiple past doctors and therapists is good enough. I’m tired. I don’t want to keep pushing this same Sisyphean boulder up the hill.
Since escaping to CO this last week, my body is almost back to the health it was at before we moved away, like magic! While it fills me with joy and gratitude and hope, the idea of voluntarily going back to where I can’t breathe or move or think or do anything except rot and cry just fills me with deep terror, so please stop messaging me to ask and comfort me about it. 😅🖤
I still really struggle to read these days. While I love words, and appreciate all the intention behind helpful messages, especially around my health and healthcare options, I usually can’t even read them, let alone respond to them. The best way to get me that info is to send it to my mom or Joe, who help me read and understand stuff. Please don’t send me things (other than memes or short poetry) to read for fun, no matter how much you think I’ll love them; reading hurts now and I can’t remember the content of sentences when I’m halfway through them and even trying to read my favorite books just makes me cry now because they’ll turn to gibberish as I’m reading for no apparent reason. Having to explain it every time is always a downer and ruins the party, but like. I’m a writer with brain damage who can’t read properly anymore and it sucks. 🤷🏻♀️
My favorite things right now are hobbit hiking in the mountains when my body will allow, playing Stardew Valley, watching TV shows I’ve already seen several times, looking at/talking about art, leftism, and occasionally seeing friends (when my health allows.) Keeping up relationships is really hard for me right now, as I struggle to hold conversations, do video chats, or leave my apartment much at all these days, and mostly what I have to talk about (outside of this month-long break in CO, which I am so grateful for) is mostly just miserable, because where I’ve been living has been crushing out even my basic functionality to the point that all I do is sit home and sleep and cry and go to the doctor and cry more. I still really want and need human closeness and community, though, and am lonely a lot of the time. (My best way of communicating rn is honestly just sending pictures of our lives with short captions and relevant memes back and forth unprompted.) I am so, SO grateful to those of you who send me loving pebbles anyways—cards, gifts, messages of support with no pressure to reply. 🥰 Y’all make me feel like it’s worth it to keep rolling the boulder of myself up the hill, even if I’m exhausted. Thank you. 💖
(Photo is just one I took of the road at sunset on solstice up near Berthoud Pass)
I named my MFA creative thesis “Bones I Found in the Garden,” because when I came through my strokes, I had all these pieces of essays and stories and poetry left from the person I was before them.
I don’t actually know who I am now. The best way I can explain it is this.
You’re playing a video game. It’s your first playthrough, Save File Number One, so it’s kind of halting and messy and imperfect. But you’re *really* attached to it. You’re so invested in this game. You’ve played hundreds of hours, exploring the map, learning the controls, learning how to respond to the environment as this character while *using* those controls. You’ve *finally* gotten past the basic character establishing arcs and are getting into the meat of the story, establishing your home base and making it suit you, assembling a team to play co-op with, finally deciding what aspect of gameplay you enjoy most after *years* of gameplay and maxing out your skill tree in that area. You’ve wooed your romanceable NPCs and they’re super into you and you’re probably gonna get married to at least one if gameplay allows it. You’ve spent so long practicing life as this character, can practically do the sequence for your special attack combo move in your sleep. You’re a few XP away from leveling up and getting to multiclass for the first time. You’re not necessarily a competitive player on a professional level or anything, but you’re doing really well by your personal standards and you’re really focused on your game progression.
And then you wake up to a dead screen. The game crashes. Total fatal error.
You message the developers and they say they are on top of it! They announce that it’s not just you, there’s been a major crash across the whole game, for everybody! They’re doing everything they can! Coding patches as fast as they can and trying to salvage everybody’s save files, but they’re only human, and they have lives outside of work. Children to feed, spouses and friends to attend to. Their lives can’t be all about fixing your gameplay experience.
The first big patch is released, and you log back into the game only to find that your beloved Save File Number One is corrupted. There’s an archived version of it that you can view but not play, but the archived images are degraded to blocky pixels in places, completely warped in others. Some images are flipped, mirrorlike. It’s a viewable story, albeit somewhat scrambled, of the hundreds of hours you’ve put into learning this game, but it’s not *accessible*. You can’t add to it or repair it or fix it, it’s just an image of what you accomplished before. There’s no continuing your beloved Save File Number One.
So, after a period of mourning and avoiding gaming entirely, you take the plunge and make Save File Number Two. You do your best to recreate your first attempt, to build your gameplay back up to the same point it was before so you can *get back to the actual meat of the game*, but since the patch, the controls are slightly different. The developers insist it’s normal small redesigns over time, but everything feels just a little bit *wrong*. The character moves at a different, choppier pace, and the control haptics vibrate harder in your hands now. Your special attack combo move sequence has changed, and you can’t seem to memorize the new one, and every time you go to do it, it kinda hurts your hands because the button layout is much less intuitive since the update. The NPCs all have different dialogue, and it plays at either twice the volume and twice the speed it did before, or *half* the volume and speed, but either way, most interactions feel like riddles instead of exchanges, and you can’t shake the feeling that this was translated from some other language by an AI translation service but not checked by a human. You keep sending error reports and messaging the developers, but they don’t seem especially concerned as long as you still have some access to the game and are paying your subscription fees to play. The subscription fees don’t seem worth it, but what are you going to do? Not play? You’ve put your whole life into this. You’re desperate to just get back to moving forward in the game’s story, finding out how it progresses, but you’re struggling just to get through the same in-game achievements that felt, while challenging, *enjoyable* and *fulfilling* the first time. Now they feel hollow—you’re not enjoying the gameplay, and you’re saving every 3 seconds but pretty sure it doesn’t matter because it can all just disappear in an instant the next time there’s another crash, and since the crash was code-based and had *nothing to do with you*, there’s no avoiding it. You try really hard to attach to the game, to Save File Number Two, but it’s hard to enjoy a game you know is likely going to crash again and get even less developer support than it had when it was a better, more popular, more playable game. They’re not going to waste resources on a game that’s already crashed once and isn’t ever going to get its big following back and make them the money they want. It’s not a good investment.
You barely log in anymore; you let your subscription fees lapse. Save File Number Two is nothing but a pale echo of the game you loved, and playing it mostly makes you sad (and a little bit angry at the developers for not providing better support.) You spend your time offline, logged out entirely. You’re not really sure for how long. Sometimes, a friend will nudge you to hop on and play a bit, and you’ll drag yourself up to make the effort for them, but it’s not doing anything for you. It’s mostly just making you sadder and angrier and trapped by either incompetent programmers or ones just not being paid enough to care that your whole way of connecting to people and relating to the world around you is basically reduced to an awful-to-play trashfire parody of itself. You write angrier emails to the developers. They insist that new players and most old guard players like you seem ~fine~ with the controls, aren’t struggling like you are with them; maybe the problem is that you’re depressed or have grown bored with the game, or are too lazy to learn the new interface?
Galled by the accusations of laziness and incompetence, you double down on Save File Number Two. You try your absolute damndest to memorize the new special attack combo move sequence. You befriend and romance the NPCs by blindly gifting them all your resources even though they speak basically gibberish; eventually you give them the right things to make them like you better, and you arduously complete the same friendship achievements that the first time felt like an adventure. You don’t actually feel attached to the NPCs, though, because you’re not sure what you did right or wrong, and your efforts don’t seem to directly correlate to how much they appreciate them, it’s just random whether or not you stumble into the right dialogue and gift selections. It feels mostly like playing BINGO with people. The engaging, multifaceted characters of before are just memories you mentally overlay over the character portraits so you can try to pretend you still have that connection to them. There are other players online, too, but the in game live communication system has been too buggy to use since the update, so the whole experience feels terribly lonely now.
Still, you’re not an incompetent idiot. Other people are enjoying this game. Other people are finding ways to make it playable for themselves. Surely, you can grind through this tedious morass and get back to where you were in Save File Number One and finally, *finally* progress further in the game. Your friends that play have caught back up; you’re not sure why you can’t seem to make the new controls work for you, why your character moves so jerkily, why the screen keeps randomly flashing all the text into alien letters and then back again. They say they aren’t having those issues, just the normal ones that went with the systemwide crash for everybody.
For the first time, you start asking everybody what the crash was for them, and what the update fixed. You find out that the crash was just people not being able to connect to the game, not anything that should’ve made things so unplayable for you. Nobody’s special attack move combo sequence was changed. Most people’s saved files were still playable. The NPC dialogue issue and translation issues seem to be something wrong with your machine, not something wrong with the game. No wonder the developers were so dismissive; they were *sure* they’d fixed *those* problems. And they were right! You just seem to have another problem, too. But they’re not responsible for problems with the console, just the game, and trying to get support from the *console* production company proves even more futile than trying to get it from the game developers. At least you’re not barking up the wrong tree anymore, though, right?
You can’t get a refund or a replacement, your warrantee is years out of date. They don’t sell new ones of this version of the console; you’d have to chuck the whole thing out and start over with a model several generations newer, and you can neither afford that nor want to go that far.
So you start taking apart your console. You’re not great with technology and it doesn’t make a lot of sense to you, but you ask your friends who have more experience. Eventually, you find a bunch of messed up wiring and a wad of what looks like lint and battery acid wedged up under the buttons. Your special attack move didn’t change, one of the buttons for it was just misfiring when you hit it, signaling twice or not at all, ruining the sequence. Digging a little further gets you more answers: tiny wires connected to the wrong things, or just straight up corroded away. You message the game developers asking what to do—should you try and cobble together repairs to this console or just give up and start over from scratch with a new one from the new generation? You just want to be able to play and basically enjoy the game you used to love.
Somebody at the game company actually sees your message and bothers to reply. It takes you a while to get your console to let you even read their message; it keeps flashing the letters into alien characters randomly. Eventually, you find out that they’d had a friend with a similar issue, and they’d tried a different solution: they’d gotten their old console professionally refurbished. It took finding a very particular specialist with a very specific skill set and a very long and expensive waitlist, but that if you’re attached to playing the game with this interface, it’s probably your best bet. You’ll have to pack up your broken console and send it off for an indefinite amount of time to be fixed, and you don’t know what it’ll cost you, but it’s literally the only option if you don’t want to just throw the whole experience in the trash and start over from scratch and hope you get a better console next time.
So you pack up the console. Lovingly, but exhaustedly, and with so much anxiety that you’ll never see it again. This is your whole life. Your only chance to get back to the story you’re so invested in and finish its arc and see what you can do with it. You pack it up, and you send it off, and you wait.
And you wait.
You message the restoration specialist, but they’re very busy and they haven’t gotten to you yet.
So you wait.
You can’t play the game without a console, so the most you can do is hover on message boards and FB groups about it, reading about each new update and unlocked achievement and even complaint with fierce jealousy and impatience. You just want to get back to the game. You just want to see how you’d be doing if you’d had a machine that worked, or even one you’d known was broken. You just want to be experiencing the game, part of the story, connected to the world.
You obsess, because there’s nothing else to focus on while you wait for the console to be repaired; you can really only be trying to prepare yourself to play the game better when the console comes back.
You start reading the game wiki and trying to understand how the game *works*. You go down rabbit holes about programming and game development and you end up knowing the game world better than you ever thought you could. You still can’t *access* it, but you know you’d be better at it than you were the first time. You could probably speedrun some of that shit.
Finally, the console comes back. It’s been *years* since you’ve seen it, handled it. You’ve been wrapped up in a net of its specs and in game trivia, but the actual object feels almost foreign in your hands. The restoration specialists have left a note: it’s refurbished and restored, but it’s a finicky machine now. It’s old, and fragile, and while it’s optimized to the best of what it can do, you shouldn’t expect it to behave like a brand new machine.
Fine, then. You can’t speedrun anything, but you can still at least play it better than before, right?
You load up the game. You log in. You play around a bit on Save File Number Two. And it *is* easier, it *is* better, than when you had the broken console. But it’s also not Save File Number One. You’ve got max hearts with a bunch of NPCs, but they’re not your actual favorites, they’re just the ones you lucked into the right dialogue+gift combo with when you couldn’t actually understand them. Now that you *can* understand them, it feels…wrong. Uncomfortable. The home base you’ve got, you built with whatever resources you had left over after trying desperately to win over the NPCs and it’s honestly a shambles. Your skill tree makes absolutely no sense and is way more stunted than all your friends’ because you couldn’t even operate your special attack combo move for so long. Not only is this not anything like Save File Number One, it also just…sucks.
You have a choice here. You can
a) say “screw it” and yeet the whole thing into the sun and hope the next game you play comes on a better console and has better developer support and a bunch of other factors you have zero control over;
b) double down on Save File Number Two again because you’ve already given it hundreds of hours, you’re *committed*…while comparing it endlessly to the memory of Save File Number One because it’s nothing but an attempted mirror of that file, feeding how many hundreds more hours of grinding into a game you are not enjoying for a save file you are not proud of or happy with or even especially attached to, since you’re considering throwing the whole thing out at all; or
c) make a new save file. Make one that isn’t trying to be Save File Number One. Make one where you play through from scratch with this refurbished console, learning its quirks as you go, as messily and organically as you did the first time, but not trying to mimic it. Trying to pick a new skill tree this time, one that works better with a controller that feels kind of laggy when you try old expert moves but just feels normal levels of unfamiliar that come with trying a new skill in a new game with new controls. It won’t be the perfect speedrun you dreamed of while the console was being refurbished, but you’ll actually be *playing the game* again, actually engaged with it in an organic way with *some* potential to enjoy the process.
You still miss Save File Number One. You’re still insanely proud of it, and how well you fumbled your way through the game that first time. You’re not really proud of Save File Number Two, but you suppose you should just be grateful you kept playing the game and didn’t give up entirely. Yeah, if you start a new one, the game could crash again, or your console could fail on you again, and you might lose everything all over. But surely it’s worth starting something potentially risky if it’s your only chance at actually enjoying your experience?
So you take a deep breath and you try not to think about it too hard and get bogged down in perfectionism before you start and you load up the game. This time, when the intro screen pops up, instead of “LOAD”, you pick “NEW.”
With Save File Number Three, you definitely do still befriend and romance some of the same NPCs as the first time around, because you’re just drawn to them, and you even enjoy some of the same aspects of gameplay. But you don’t worry about trying to get your skill tree to look like the one in Save File Number One. You don’t actually like the way these controls handle the finer aspects of that branch of the skill tree, so you try out others. It’s a broader tree, less tall, and you’re way behind on achievements as compared to your friends, but you’re actually enjoying the game now. You’re enjoying seeing the updates the developers have made, the way this console differs from the first time around, rather than feeling trapped by them. You’re not *really* behind anything; new players are joining every day. You make friends with some of them, too, and other players with refurbished controllers, because even if they’ve played hundreds of hours fewer than you have, or are way less far in the game than you’d gotten last time, they’ve got new tips and tricks that didn’t even exist when you played the first time. Your old friends give you some gentle shit about having n00b friends and getting game advice from memes, but their original consoles still work, and they don’t really get what it’s like to have to engage with gameplay piecemeal. You don’t mind; they love you, and they game with you, and if you don’t spend as much time directly with them as you used to, it’s just because you want them to see you as this Save File Number Three instead of comparing you to their memory of Save File Number One, like you had for so long. You don’t grudge them their love of the memory, but if you keep comparing yourself to it, you’re not going to be able to enjoy the game. You need to properly invest in Save File Number Three if you want to explore the story before your console gives out more permanently and you can’t afford whatever fancy repair is required.
And you do. Want to explore the story. You never *wanted* to throw out the game or your console, you just wanted to be able to *play the fucking game with a working console*. And it might be a slightly different game and a slightly different console than when you started last time, but you can either focus on that and waste what hours you have left on trying to recreate a memory that can never be recreated, or you can focus on relearning the game and enjoying the process.
So that’s what happened, and I’m doing the latter. Because if I don’t find a way to enjoy the game again, I’m going to throw my console into the sun. And I want to play through the whole damn game. I want to see my character go from the fumbling child she is now to a greying elder, surrounded by loving community. It won’t be the child I was once or the elder I might once have been or the community I’d planned, and I might not make it all the way to the greying end like I hope, but I will be playing the game and learning the controls like it’s new, and doing my best to feel joy in the journey of it.
I don’t feel like Alena. I don’t know what Save File Number Three’s name is, but trying to be Alena after my strokes hasn’t worked, and I’m tired of wasting everybody’s time, especially my own, pushing that rock uphill when I don’t even want to.
I don’t know what rock I’m pushing next. I don’t know. I don’t know my own name; none of them ring like a bell in my chest. I don’t know, and I love that you care, all of you, but I’m not her, and I don’t know who I’m becoming yet. I don’t know. Don’t ask me, and please, don’t try and tell me. I don’t want to just waste who I’m becoming by remembering me as I was and missing her. I want to be something new. I *have* to be somebody new. And I’ll keep what works, but I can’t carry the rest. I never should have tried, really, but I did the best I could with what I knew at the time. Now that I know better, I have to try and do better, even if it means starting mostly over. Otherwise I’m never going to get to play at life again at all. And I truly, deeply want to. 💖
So yeah. Stay tuned to see what I become, I guess?
Not having a great brain week. Was on an upswing of functionality, but then the CNA who was supposed to come help us out ended up being a nightmare person and doing more harm than good, and just keeping her in check for the week and a half we had her burnt out my small pile of reserve spoons. I am spoonless once more…and now they can’t find us a replacement for her. I haven’t even had the energy to open my birthday cards/presents yet.
Highlights from the terrible CNA include: -her telling us that she literally believes that “test tube babies” and babies born through IVF and surrogacy “don’t have souls, for real. They’re just like robotic cutouts; God wasn’t there when they were conceived, so they didn’t ever get souls.” -her telling me that I should just pay someone else to do my taxes while I was struggling to process instructions from and assemble paperwork for the person we pay to do our taxes. She was supposed to be helping me understand the paperwork; we had already discussed that it was for the tax accountant at least seven or eight times. -“Oh, but you’re so young, and you look great! You’re not so sick, you probably don’t really need my help with [insert basic CNA purpose task that I absolutely cannot manage for myself], it’s so easy,” over and over and over and over and…
Also, really sick of having to explain to people that, just because my body is doing well or appearing to “get better,” it doesn’t mean my brain is in gear to match. Me successfully managing to go out—while other people guide me, transport me, protect me from overwhelming stimuli and from having to do the meltdown-triggering stuff, ie a lot of work from my support system that you don’t really see unless you’re out with us, watching the way Bruce subtly guides me through a crowd or the way Zach helps me go through the menu—does not mean I am somehow in possession of a working brain. I’m usually not, and often doing the physical stuff robs me of the ability to do the mental stuff—I confirmed this the hard way, when I got lost in (the extremely small city of) Newcastle despite being in the same identical spot and doing the same identical process that Ally and I had done three times already earlier that week. Except, when we’d done it before, she’d been there to read all the little map things and directional/store signs (I can’t read maps or pictographs now, and written signs warp strangely, moreso when I’m stressed,) and check the streets as we crossed them (I have this thing now where objects moving quickly towards me strobe and turn invisible and I freeze like a deer and this is also a major part of why I can’t drive anymore,) and navigate around knots of pedestrians (I now have the spatial awareness of a toddler and also fits of vertigo, so I crash into people a LOT when I don’t have someone else’s body to follow,) and remember the name of where we were going (I can’t easily hold things in my head while moving physically anymore; the concentration that movement and balance take mean that I rarely have any processing power left over for thoughts/memory—I can hold a light conversation while walking, but that’s on a good day,) and process the visuals of more than a 3’ radius around our bodies (I can no longer do this while my body is in motion without walking into/off of things, which is another reason I am unable to drive now,) and so I ended up getting overstimulated AF and just sitting on the back edge of a bookstore display and quietly weeping for twenty minutes before pulling myself together and trying to ask people for directions…which went really badly, because I can no longer easily process, follow, or remember directions correctly, and I ended up twice as lost and in the wrong transit station. I only got back without having to call an Uber (terribly expensive and very slow, and it was hot as hell out,) because I finally found a girl in a wheelchair and her companion busking, and I offered them £10 if they’d lead my brain damaged ass the (very short, maybe four blocks) entire distance to the correct bus station when they finished their set. When I got there, I still had to have Ally step out of work (a bake shop attached to the bus station) for a moment to help me figure out the bus timetable and where to wait for it. It was a miserable day, and I was basically useless for the next two after it.
So yeah, I spent most of the last three years not doing anything small and joy-bringing I wanted (needed) to, largely in part because it made people not believe me when I told them my brain didn’t work—“well, it seems like you’re well enough to do what YOU want to do,” whenever I managed something joy-bringing is a thing that cut me deep. No, I have a support system of people willing and sometimes able to make some of the things I want to do feel in reach for me again. I cannot magically translate Zach reading the menu or Bruce navigating the crowd or me actually managing to put on makeup despite the hand tremors into me or those other people being able to do larger scale practical things like finding me new medical help, doing my paperwork/taxes, cleaning the apartment, managing organizational tasks, etc. That’s not a thing and even if it were, it wouldn’t be reliable or sustainable or even really okay. So I spent a lot of time as a dour hermit out of guilt at the idea of being happy while there were things that needed to be done. I needed to spend my energy on HEALING and RECOVERING until I was well enough to get the important stuff done. I needed to focus on that and only that, so I could resume my place as a functional member of society.
Yeah, turns out that’s probably not happening, in terms of my likely health and disability outlook. This is not a thing I will recuperate from so much as need to learn to manage and live with. It’s also DEFINITELY not happening if I’m so depressed and isolated that I give up and unalive myself, which has been an intermittently hovering intrusive impulse since I was a kid. It remains even when I’m happy, but looms huge when I’m depressed. Not pursuing the things that bring me joy and fill me up because I couldn’t do the things that are now hard or impossible and thought there was some correlation between those abilities? Has destroyed some of the relationships I cared most about, kept me creatively stagnant, and made me so depressed that I’m arguably less functional than I was even right after my strokes. Certainly less able to plan and organize and process information.
If you need me this week, you better be prepared to badger the hell out of me, because I am straight up muddling through thick fog—but please do it gently, as I’m so overwhelmed that I keep just dissolving into tears. My brain terrarium is all storms right now. 🧠⛈🫠
Unrelated, I took this pic of a glorious double rainbow off my balcony this week. Denver largely feels like living on terraformed Mars to me, but it has such gorgeous storms.
Alena Indigo Anne Sullivan 